For me, the hardest time in Owen’s six months in the NICU was not when he was at his sickest. During that time, I knew Owen’s outcome had nothing to do with me. I left that to your expertise and, mostly, to Owen and God.
The hardest time for me, was when I was not heard.
When Owen’s breast milk ran out and he was switched to formula, there was an instant change in him. He suddenly could not tolerate increases in his feeding volume. His reflux went from nothing to very severe. He suddenly had such extreme diaper rash that the wound nurse was called in to consult. He became very irritable. And then more and more and more irritable.
I kept saying. “It’s the formula.”
“It’s the formula.”
“It’s the formula.”
And then one horrifying day I watched Owen give up. It’s the only time in all that he’s been through where I really believed he was done fighting. I went home that night and curled in the fetal position and sobbed to Kyle, “I saw him give up. We have to get him home. He’s starting to give up. He’s never given up before.” I’m talking about the time that he stopped breathing at the end of a feeding. His heart rate and sats dropped. He was about to be bagged so his stomach was emptied before bagging him. As soon as the food was out of his stomach, he opened his eyes and started breathing on his own.
Still. I was not heard.
Is he allergic to the formula? “No, you replied. This isn’t what an allergic reaction looks like”.
I think there is something about the formula. His brother couldn’t tolerate the pre-made formula, can we try the powder kind? “We’ve never heard of that before, plus the powder kind isn’t available here” was the dubious reply.
Should we get a GI consult. This is really extreme. Kellen had pretty bad reflux and this is extreme. “No, need for a consult. We think Owen needs a Nissen,” was your solution.
Fast forward to yesterday (my today; I can’t sleep because I’m too angry) and Owen was seen by a Gastroenterology. Guess what? They think he’s allergic to formula. The reaction seems worse in (pre-made) Pediasure…maybe a preservative in it, or something, was one speculation.
It didn’t hit me until I was trying to fall asleep, but now I can’t get it out of my mind, “Oh My God, was I right?” Could this problem have been solved all that time ago? And then the what if’s spiral out of control. Really, really out of control. They aren’t even worth discussing because they are speculation. But I can’t help but wonder, why? Why weren’t my ideas considered then? Why wasn’t I heard?
I know this team of doctors well and trust and respect and appreciate each and every one of you. I know you pour everything you have into your job. I’ve seen you cry with parents, I’ve seen you go above and beyond in so many ways to save these babies, including Owen. I know you care. I also know that Owen’s case was multi-factorial – there were many things happening at once. It was difficult to isolate cause and effect of each decision. I understand that your job is complex beyond my comprehension. I know that changing formulas probably wouldn’t have been THE silver bullet. I know you’re great at what you do and I will never think bad of you.
But I’m still angry.
I wasn’t heard.
For weeks, I left the NICU every day exhausted because I was trying so hard to get someone to hear me; to help me make my child comfortable.
You did not consider my ideas…and now, an expert is coming up with the same idea that I had all that time ago. The thought that maybe, just maybe, we could have, at the very least, improved Owen’s comfort (and likely his health) for the last 1.5 years makes me sick to my stomach.
Not truly.. but there are parts of me that hope this test with the hypoallergenic formula fails and that’s there is another answer because I’m not sure how to get rid of the anger I’m feeling towards people who saved my child’s life. And the anger doesn’t stop with you. It’s also at me. I gave up on my ideas after I wasn’t heard. I just accepted that “this is Owen”. He just has really bad eczema and extreme sensitivities to any changes in the volume, rate or density to his formula and because he’s been doing it his whole life, I accepted that he cried every time he poops. I stopped listening to my instincts. I stopped listening so much that I was almost a little dubious today when the doctor suggested allergies.
And then, it hit me. It makes too much sense. There is a good chance that he’s allergic to formula.
I am so angry.
I just wish my ideas would have been considered.
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